MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Alpha-mannosidosis virtual community meeting: summary report
This first international alpha-mannosidosis community meeting was created to bring people together and strengthen connections across countries. Here we summarise the discussions from the meeting.
Understanding alpha-mannosidosis
A guide for parents and caregivers that aims to answer questions and provide information about the disease.
Patient diary
A resource for people living with alpha-mannosidosis and their caregivers to keep track of their medical and life journey.
Alpha-mannosidosis information for healthcare professionals
Share this as a quick reference for healthcare professionals who are not familiar with alpha-mannosidosis.
Preparing for appointments with healthcare professionals
Prepare for appointments with healthcare professionals who may not regularly see patients with alpha-mannosidosis.
Alpha-mannosidosis information for schools
An overview for schools and their teachers on how to support the learning and wellbeing of young people with alpha-mannosidosis.
Information about going to school
Preparing for school meetings and ensuring support for children and young people with alpha-mannosidosis.
Transitioning to adult healthcare – coming soon!
This resource will be available soon.
Wellbeing resource – coming soon!
This resource will be available soon.
The importance of clinical guidelines
Sophie Thomas from the MPS Society and James Davison, consultant in paediatric metabolic medicine at Great Ormond Street Hospital in London, explain the development and purpose of clinical guidelines at MPS Matters 2025.
Be prepared: emergency information for admission to hospital
Emergency information for admission to hospital that you should have to hand.
Covid
Please find below some updated information from our adult clinical centres. The clinical centres are working tirelessly to manage the...
Portacaths - To Port or Not to Port by Dr Fiona Stewart
MPS National Conference 2019 Portacaths - To Port or Not to Port by Dr Fiona Stewart Consultant in Medical Genetics, Clinical Genetics at...